The CPE Small Grants scheme has reopened for the academic year so we wanted to share reflections from previous recipients of the grants.
The following reflection is written by Ratna Sohanpal from the INCLUDED study who was awarded a Public Engagement Small Grant in February 2022.
Communities are eager to and want opportunities to participate in research. We have to create opportunities by making the time to go into these communities early, to listen and to understand their needs if we truly want to design and conduct research that is diverse, inclusive and promotes change. The underserved communities that we want to include in our research are not “hard to reach”. This expression is inappropriate as it suggests the issue lies within the community rather than within our research approach to them.
We have received a study grant to improve inclusion and diversity in UK clinical trials through understanding how ethnicity data are collected, used, and reported so that we can make recommendations to improve engagement with trials and impact of trials for underserved groups.
After our initial meeting with our public advisory group (PAG) members and community leaders, self-referred to as ‘community connectors’ (CCs), we realised that translating our study documentation in some south Asian languages was not going to be enough to engage with our potential participants: community members belonging to different minoritised communities underrepresented in research.
Working closely with CCs of three community organisations, Social Action for Health (SAfH), South Asian Health Action (SAHA) and the Caribbean African Health Network (CAHN) taught us that the usual approach to recruiting participants (sending of study invite letter, participant information sheet to potential participants) was not an effective recruitment strategy. The CCs recommended engagement methods specific to the needs of their community to help reach people who may not have had the opportunity to participate or who may not have participated in research previously because of preference not to use written material or had difficulties with using the standard written documents.
In addition, and outside the study grant, we also carried out two focus groups with Latin American women from Mexico and Brazil. The focus groups were conducted by a study team member who belonged to this community and was able to recruit potential participants through previously established community connections, as well as promoting the study on WhatsApp groups they were already a part of. The focus groups were carried out in English as the participants who showed interest felt comfortable with this and the team member who led them speaks Portuguese but not Spanish. Nevertheless, the importance of having trust and rapport with the community is further highlighted here as the team would not have been able to access this community as easily had one of the members not already been integrated in it.
The PAG members highlighted to us that it was very important to build trust with minoritised communities due to past mistakes made by the research community towards them and there is need to build trust and rapport among these communities if we want to engage these communities in research. The PAG members were happy to write a script (with feedback from CCs and study team) that could be introduced at the start of the focus group to help build trust and rapport with the participants in the focus group. The script comprised statements in relation to acknowledgement of the mistakes made by the research community towards minoritised communities, purpose of this study and how the findings of the study would be used and communicated to them. One PAG member and two study team members used the script to produce a video podcast in English. The CCs introduced the script at the start of the focus groups in formats suitable for their community members such as reading the script or showing a video in English or in a non-English language.
The small public engagement grant was used in the translation of the English language study documentation into non-English languages and contributed to the cost of producing the video podcasts in several non-English languages. The grant helped in producing study materials according to the recommendations of the PAG members and CCs and this in turn helped us to recruit a diverse and inclusive sample for our study.
Each community organisation successfully recruited and conducted two focus groups, either face-to-face or online as per the convenience of the participants. SAfH also conducted one individual interview. The groups comprised 4-6 participants each. The study participants were of varying age-groups, gender identity, geographical location (Manchester, Leicester, London) and ethnicities (Bangladeshi, Somali, Ugandan, Pakistani, Indian, Black African, Black Caribbean, Mexican and Brazilian).
The contribution made by our PAG members and the CCs has been invaluable. We have developed good relationships with our PAG members and CCs over the course of the ongoing study and this has led to discussion of future research collaborations.
This work has shown us the importance of working collaboratively with minoritised communities, not only in our work, but across all health research. We are currently collaborating with our PAG members and CCs in writing a grant application in response to an NIHR Programme Development Grant call - Developing Innovative, Inclusive and Diverse Public Partnerships. Our proposed research will contribute to improving partnerships between academic researchers and minoritised communities.